Wednesday, December 31, 2008

I'm laying on my back after having had the spinal tap (having dental work was MUCH worse!) and have to lay on my back for the next 4 hours to avoid the horrible headache that can occur.

The good news is that I'm going home tonight! The case worker organized for us to have home care medication for the next five days, so tomorrow we'll have the equipment delivered and have a nurse come by to show us how it all works.

While we were dealt a pretty hefty blow today with the diagnosis, knowing I can go home in 5 hours makes even this uncomfy bed bearable!

Spoke with the neurologist again this morning only to find that the brain MRI showed 5 lesions, one of which was pretty typical of MS. I'm awaiting a spinal tap which will be tested for specific protein bands that again would be indicative of MS. Downside to the spinal tap is that even if the test is negative, that doesn't meant I don't have MS. So, for now, we're moving forward knowing I have MS and will have to deal with this for the rest of my life.

I will be in the hospital for the next 5 days undergoing a steroid treatment unless they can arrange to have me undergo the treatment at home.

My dad is driving in, as are Joe's parents.

Now we move forward (at least forward as in out of the door and to the cafeteria. It's 1:15 and there are no signs of the lunch lady).

Tuesday, December 30, 2008

Day two brought about new tests, repeat tests and a visit with an actual doctor!

At about 11 this morning, I started the vision and auditory evoke response test and nerve tests. First I was hotwired with lots of little electrodes all over my head and neck (and later on my hands and feet and legs).

The vision test had me looking at a little dot in the middle of a small tv/computer screen while the background (black and white checkerboard) moved back and forth. This went on for 15 minutes with the left eye covered and 15 minutes with the right eye covered. By the end of this half hour, I was so tired from having focused on the small sticker on the screen and sitting upright. Luckily the rest of the tests for this batch had me laying on a bed.

The auditory section of the tests had me listening to beeps. Simple, not too loud or invasive to the ear.

The nerve tests were a little more uncomfortable. The technician (although she was the Director of the program, so I knew I was in good hands for these tests) hooked up my hand to a conductor and then proceeded to make my fingers twitch. It felt like having electro-stimulation therapy for physical therapy... only bumped a few notches. It wasn't so much painful as just uncomfortable. The same thing was done to both feet, although for the right side, the conductor was not directly on the nerve, so it felt as though there were two sharp spikes digging into my flesh. I was glad when that test was over.

I returned to my room and had lunch with my mom who had spent the whole day with me at the hospital. Joe was home being Daddy. Shortly after we got back from eating, we saw the doctor. Yes, Virginia, they do indeed have doctors at hospitals, not just nurses and nurses' aides.

The doctor said that he'd seen something on one of my MRIs from the previous day. My spinal MRI was clean, but he'd found some transvere myelitis (TM)on the neck MRI. You can read for yourself what that means as I'm sure to botch any description. Basically there's something there but that's not the ultimate diagnosis. In order to rule out other things, like MS, he ordered a brain MRI (luckily just one - not two like I had done the previous day). If this MRI is weird or inconclusive, he'll order either a spinal tap or another MRI, this time using dye (I'm reluctant to do that one just now as I'm still nursing and the dye would require me to pump-n-dump for 48 hours. Having a baby who hates whole milk makes this is a little difficult.). So, for now I am hopeful that what I have is TM as it seems to be fairly straight-forward with no major lasting damage - as he said, it's a one-time deal. Could have even been brought about by the fever (virus?) I had a few weeks ago. A lot of the symptoms mentioned on the fact sheet I have, right down to the extreme hot/cold sensation in my leg and the discomfort on my arm when fabric touches my skin. He has not ruled out MS and says that is still a possibility, so while I'm optimistic that it's not MS, I'm not being overly naive in thinking that all is well.

I'm still stuck in this hospital bed waiting. Nothing more to do this evening but sleep (the nurse said if all my vitals were normal at 10, she would skip the 2am vital check - thank you!) and wait to speak with the doctor in the morning. Hopefully with a good night's sleep comes good news in the morning.

I saw a link on Gillian's blog when her dog made headlines for indecent shredding of toilet paper. I knew I had the perfect picture of Indi defiling AOL man, and was thrilled when she, too, made headlines!

So, it's early here at the hospital and the same holds true as when I gave birth. Despite being in a hospital where there are people taking care of you, you get no rest. I didn't get to bed until about 11:30pm and then I realized that my condition had changed a bit. More on that in a moment. So, I called the nurse who talked with me a bit, with the doctor and then with me again. So, bedtime around midnight. That wouldn't be so bad, except that I knew to expect a visit from the nurse again at 2am to check my vital signs - yes, I'm still alive; no need to double check. The nurse aide came in and wasn't the slightest bit quiet about it - have you ever had someone rip open velcro while you're sleeping? That was the sound that mostly woke me up - the velcro from the blood pressure cuff. I think I fell asleep for 20 minutes after that when noise from the staff room door opening and closing woke me up. I've been laying in bed for the past 45 minutes and just decided to get up. No point trying to fall asleep on two uncomfortable pillows and a bed that adjusts to each little movement.

So, what better activity to keep me busy than blogging... I'd be on Facebook but WakeMed has blocked Facebook (probably because it's listed as a "personal and dating" site).

I know how I ended up here but it seems like a good place to document it all while it's still fresh in my mind.

On Christmas afternoon I noticed I was experiencing a strange skin sensation in my right arm. This wasn't highly unusual as I've experienced this before. I had mentioned it to a doctor who said "I'm sure it's nothing." Ok. So, it's happened a few times that I can remember (although specific times / years / place of such episodes are lost to me) but I've started to worry about it a bit. Figured I'd call the doctor and look into it after the holidays.

Later that afternoon, I was walking down the stairs and felt as though my feet were very cold. I bent down to feel and they were warm, so I didn't rush up to grab some socks. First left leg incident.

Later that night as I was brushing my teeth, I noticed as I leaned against the counter that the cabinet door felt warm along my left thigh. I thought it was odd and even went so far as to feel the door. Not sure what I was expecting to find, but at least I investigated - could have been some spontaneous combustion of the hair dryer or flat iron.

A few moments later, while sitting on the toilet (at least I didn't say "the throne"!), it felt as though someone had been sitting on it and warmed it up, on the left side.

Then I jumped into bed between the nice cool sheets, only the left side felt as though Joe had been in bed warming it up - but he hadn't.

All of those things prompted me to call my regular doctor in the morning. I ran out to the appointment early in the morning and had blood drawn. The doctor's initial "diagnosis" (if you could call it that) was consider Vitamin B12 deficiency. He ordered bloodwork to test for that, Vit D deficiency and a few other normal blood panels. He also said that if the bloodwork showed nothing, he would refer me to a neurologist for further testing.

Over the weekend things stayed the same until I returned from a walk with Joe and Ava on Sunday afternoon. For some reason, I felt as though I was walking less gracefully than I normally do. I'm not clumsy but caught myself scuffing my feet as I walked several times. I thought it could be attributed to the fact that I was wearing different socks that made my feet slide in my shoes more. When I got home, something wasn't right and for some reason I checked my leg and felt that it was partially numb - not fully as I was still experiencing the weird warm sensation (most notably while sitting on the toilet seat).

We called our practitioner who suggested a trip to the ER for a CAT scan or MRI to rule out stroke or MS.

Arrived at the ER at 3pm. Left at 9pm.

What happened in the middle was a lot of waiting, a CAT scan (which ruled out signs of a stroke), a brief consult with the ER doctor and orders to call the neurologist in the morning to schedule an MRI - again, to rule out MS or other neurological conditions.

We were lucky to get into the neurologist Monday morning (instead of having to wait until January 15th, the next available slot), so packed up the baby and hauled ass (to put it mildly - I was nursing Ava when Joe told me of the appointment time and we had about 20 minutes to get ourselves ready). Of course, he told me the appointment was at 10:15 and only when we pulled into the parking lot did he confess to bumping the time up 15 minutes to ensure that we'd be there on time! What followed next was some waiting and some more waiting.

I feel like I've spent the better part of the past two days sitting and waiting. And all this while, the brain has lots of time to go a little nutty with things.

The neurologist was very good. He was thorough and well-spoken, a little shy and understanding of how I must be feeling. He did a long exam and during that exam discovered something I had not been aware of. Although the weird skin sensation on my arm had remained the same (and continues to remain unchanged), the weird temperature sensation on my left leg had progressed halfway up my back on the left side. I only knew this as he went across my body with what I describe a medical hammer (that's what it looked like, although there was no hammering). He would place the metal hammer on one side of my right leg and then move it to the same spot the left leg and ask if they felt the same. I would reply that it felt cold on the right, warm on the left. This continued at all points up my leg until he reached the spot on my back where I flinched quite hard. Suddenly the warm sensation had turned to pain and discomfort. He was calm when he said, "That really bothers you, doesn't it?" I don't think he was expecting that reaction from me; I certainly wasn't. As I was dressing, I realized the left side of my stomach felt the same way, so I him test it the same way. Same painful flinch.

The doctor left the room for a few minutes to make some notes and make some calls. When he returned, he said he wanted to run some further tests, including two MRIs (one of my cervical spine [neck] and one of the lower spine) and some sensory tests. He also threw out the words MS and other things such as compressed discs and tumor.

His nurse called over to the hospital and found that there was a bed available for me. Rather than have to go back and forth for a few days to get all of the tests done, we decided for me to check into the hospital and get them all done in one shot. Easier said than done, though. I got to the hospital around 2pm and didn't get the MRIs until 6:30pm. They did draw blood earlier in the afternoon but neither the results of that or the MRIs will be known until the morning. I probably could have gone home had I insisted, but I'm glad I didn't. As I was trying to fall asleep, I realized that my cold right foot was causing the same painful flinch on my left leg (until then it had only happened on my stomach and back area). So, something was moving down my leg. I notified the nurse and she spoke with the doctor. I guess for whatever reason my case is not considered an emergency of any kind as he only ordered more observation (this was a different neurologist than the one I'd seen earlier in the day).

So, now I approach 2009 with

-- a few things to scratch off my list of things to do in my life: get a CAT scan or MRI - check!

-- a few hours wasted sitting in waiting rooms and hospitals

-- the feeling of what it would be like to be trapped in a confined space and not be sure you could get out (I did ok for the first MRI - 20-30 minutes of the loud noises - but there was no rest time between the two. I was laying on my back, still as could be, and the tech told me I'd be moved further back into the chamber for the second MRI. There was no time to move around a little, sit up and stretch. I went from sitting really still to sitting really still, only the second time around I started to feel really warm and towards the end, became a little panicked. I managed to snap myself back to my mantra ["I am healthy. I am brave. I am strong."] but towards the end I started to have crazy thoughts about being abandoned in the chamber due to a fire emergency or having been forgotten about by the technician. I was more than a little glad to be out of the chamber when it was all done and hope to not have to experience that again any time soon.)

-- less sleep on my own without the baby (who would have thought that possible!)

-- and much uncertainty.

I don't know what the doctor will be telling me today. I'm scared of what he has to tell me. I'm also healthy, brave and strong and need to keep reminding myself that although I've never been faced with anything like this before, I come equipped with the strength to pull through. A friend of mine who survived breast cancer told me that I have "the strength of a thousand men in my body" - I'm calling on all of them to fight with me.

Friday, December 26, 2008

This year we had a full house! My parents and sister and brother-in-law drove in on Christmas Eve and Joe's parents joined us all on Christmas afternoon. Somehow, with 8 adults, a baby and a dog, we all managed to stay sane and happy! There was much food enjoyed by all - and more sweets that many of us are still enjoying! Lots of presents and (hopefully) a good time was had by all! Thanks to Karen for taking such great photos!

Sunday, December 21, 2008

Had a busy weekend around the house and out and about. To prepare for a household of people this weekend, we spent some time cleaning the house and making room. The pantry is organized, the bonus room is ready for Karen and Pern (well, more ready than it was yesterday morning), the first floor is a little less cluttered.

After Ava refused to nap in the afternoon, we decided to all head to Michaels and Target for a few things. Had some hot apple cider at Starbucks (my only of the season - it's yummy but sooo sweet) and picked up things to make name cards for the table. Came home, ate dinner, put the babe to bed and then watched "Run Fat Boy, Run" - pretty funny!

Sunday was much the same but with a little less cleaning involved. We decided to go out to lunch today as it was the first day since all having the plague that we felt we wanted to pay to eat out and would actually enjoy it. Off to Mimi's Cafe and then to the grocery store and back to Michaels for a tin for cookies. They had none. Drove around for a while and were very quiet as Ava fell fast asleep in the car before we even got to the store. Guess that'll teach her to refuse a nap in the morning. Or maybe not!

We're only hoping for a full night's sleep tonight. We get most of that each night but for the past week or so, 5:30 has been deemed the new 7am... but is greeted with screaming. It's almost like a baby night terror (although those aren't supposed to start until around age 3), but whatever it is, listening to a grumbly baby at 5:30 - 7 is no fun. Unfortunately it's not a bad habit that we can stop. We just go to bed hoping...

Friday, December 12, 2008

Thursday, December 11, 2008

Seems I birthed a long skinny baby. 31" long (97th percentile!) and 20lbs 9oz (50th percentile).

Got the go ahead for all food groups except nuts; was told to introduce real milk in the sippy cup so that when I decide to wean from nursing, Ava will take the milk from the sippy cup and not refuse it because "sippy cups have only been for water and juice." Makes sense. Right now the milk sippy cup is sitting on the floor. Ava's not a focused drinker; she prefers to drink on the go and revisit any sippy cup she has laying around. Won't work so well with milk, I'm afraid.

She had two shots and so far has shown no ill effect. She ate lunch and is now playing with a baby bundt pan on the kitchen floor.

Ran into Wal-Mart on the way home (probably the 12th level of hell compared to Joe's 6th level of hell: Babies-R-Us). Got buttons and ribbon to finish the dress I was hoping to make Ava for her birthday. It's now a Christmas dress!

Best get cracking if I want the dress to fit her by the time she actually wears it!

Tuesday, December 09, 2008

Ava with her new found favorite toy - a Christmas card from our friends Carrie, Simeon and Ana out in Portland, OR. It's the only thing that keeps her entertained long enough to get her diaper changed.

Monday, December 08, 2008

While browsing on etsy.com last week, I found a vendor with goods for sale that were just beautiful. Simple, elegant and earthy. I knew I had to get something from her. I decided on a thin bracelet made from wood, personalized with text of my choosing. Her examples were inspirational (things like: "You are loved" and "Change the world") but I settled on something a little more personal for me - and hopefully one day for Ava as well.

"But how loud is a lion?"

Her first word, aside from Dada and Mama (and the other assorted sounds babies make first) was "lion" - ok, so she doesn't quite have the "l" or the "n" sound down but when we ask her to say lion, she says it. The quote comes from one of her favorite books: How Loud is a Lion by Clare Beaton. When we ask her to find the lion, she makes a beeline to her book bin and promptly pulls it out. We're still working on the "ROARRRRR!" sound but for now the "IO" sound she proudly makes will keep making us smile!

Happy 1st Birthday, my sweet girl!

See more from Paloma's Nest. The bracelet came nestled in a little nest, wrapped up in a little box with a fabric 'thank you' tag and a bow. Beautiful!